Negative for CLL and lymphoma panel

[Jenny2020]

Hi. I just received my bmb negative for CLL or lymphoma panel. My dr stated he believes I do have some form of leukemia but the final diagnosis is not in. The flow cytometry was inconclusive as well. He said my prognosis should be could and certain life style changes should help me possibly beat this on my own. He stated he is not alarmed at all I’m still confused at to what type of leukemia it could be which still causes

Me concern.

[Hidden]

differential diagnosis is used when nothing matches exactly. the report must have several possibles along with a most likely or things it is not-what's left is usually what you have and the diagnosis you get -at least that's what happened to me

[Jenny2020 in reply to Hidden]

So what do you have

[Hidden in reply to Jenny2020]

I have b-pll which is a subset of cll. However my point was none of my bmb matched the exact parameters of b-pll. they listed 4 possibles then using info that was found eliminated 3. Closest to what was left was b-pll.

[Jm954 Administrator]

Jenny,

I'm sorry you are left with this uncertainty after all the tests and procedures, it sometimes happens despite all the clever things they can do.

I suppose the good part is that you may not have anything wrong at all and you had a virus that caused a strange reaction. I'm rather uncertain how lifestyle changes will help you to beat any form of leukaemia but if you need to lose weight or get fitter maybe this is a wake up call and now is the time to do it.

I think I would be asking my doctor (not the haematologist) to repeat my blood test in about a month just to check on what is happening. It's likely that it will return back to normal but if not then you are aware of any changes and can go back to the haematologist if necessary. If your count is still high but not changed much then perhaps a repeat a month after that too.

I'm hoping this is all nothing and 2020 will be a good year for you Jenny.

Let us know how you are

Jackie

[Jenny2020 in reply to Jm954]

Thank you. No I’m a smoker so he thinks that’s not such a good thing obviously. Which I’m in the process of quitting. I’m to repeat labs in 2 months per his instruction and if it is still on the lower end of high or lower he stated to repeat them in 4 months. So I suppose that’s all I can do. It’s all just so bizarre with all my other tests leading to CLL and that has been ruled out.

[AussieNeil Partner Administrator in reply to Jenny2020]

Smoking can cause lymphocytosis...

[Jenny2020 in reply to AussieNeil]

What about smudge cells

[Jm954 Administrator in reply to Jenny2020]

Smudge cells can be found on normal blood films depending on the skill of the person making it and how old the sample is.

[Jenny2020 in reply to AussieNeil]

You seem to be very knowledgeable so how are other leukemia’s found if it’s not from bmb or flow cytometry

[Jm954 Administrator in reply to Jenny2020]

Other leukaemias are also diagnosed by flow cytometry, either blood or bone marrow sample. So if it was another type the results should have given them an idea of what it was.

Jackie

[Jm954 Administrator in reply to Jenny2020]

Your Dr sounds very sensible and caring, you seem to be in good hands. I honestly don't think there is anything else to be done at the present time Jenny

Jackie

[Jenny2020 in reply to Jm954]

Yes he is. He was my moms oncologist but his specialty is multiple myeloma. He texted me last night as he’s on vacation and knew I was worried. So I’m very fortunate and I know if he said for me not to be scared I shouldn’t be. It’s just quite shocking and my anxiety has been debelitating with all of this. You have all be so calming for me during this. Thank you so much

[Sushibruno in reply to Jenny2020]

I know how you're feeling Jenny it's easier said then done because I've been there and still am. Try to take it easy you will get the answers you're looking for. And like Jackie said your doctor sounds very caring. Good luck please let us know how things are going👍.

[Smakwater in reply to Jenny2020]

Not going to preach at you about smoking, as I was once a smog choagie too. I just wanted to offer you some sound data that could be beneficial in strengthening your perspective towards quitting.

#1. Although I led an active lifestyle, I smoked off and on from 1970 until 1999. 20 years later my lungs and heart now show to have recovered, and I was able to put 1300 miles on the bike in five months this past year even during CLL treatment. I can honestly say I feel better than I have in 10 years.

#2. Contrary to a common belief among smokers that smoking relieves stress is the fact that it physiologically is proven to increase anxiety, stress, and a multitude of other counterproductive health influences. (see link below)

mentalhealth.org.uk/a-to-z/...

Hope this is useful,

JM

[Jenny2020 in reply to Smakwater]

I know. I’m in the process of quitting now. I’d love to feel better and definitely Don’t need anything else to harm me. Tha k you

[Smakwater in reply to Jenny2020]

Go Jenny!

[Jenny2020 in reply to Smakwater]

Thank you!!! I’m really trying. My biggest obstacle is getting over anxiety and increasing my appetite. I’m on 110 5’5 so I don’t have any room to lose weight. So any advice on that would be great

[Smakwater in reply to Jenny2020]

I have only an opinion base with regard to aspect of weight health and CLL. 110 5'5" sounds qualifying to me. Maybe someone else on the forum is more knowledgable in this area.

Let's ask?

Anybody out there?

[Jenny2020]

So what is the treatment options and prognosis of that

[Jm954 Administrator in reply to Jenny2020]

of what?